Does many of you have burning pain all over the body as a symptom? I've had it for many weeks now and it's very annoying. It changes places but I usually have it in the thighs, calves and arms. Has anyone of you found anything helpful for it? Or have you noticed what makes it worse (food etc)? I'm currently tryin benfotiamine and it seems to help a bit but not too much. I'm going to try methylcobalamin next. Thanks.
BF.
Posted by painted turtle (Member # 7801) on :
Last night I was just saying to my partner
"I don't know how someone can take this kinda pain for so long and still be alive"
I got the burning pain and numbness in my spine among other places and it has been at a level 10 the last couple days.
I don't think anything helps...really, as far as what I have injested, without side effect --
What I do is lie flat on my back with a heating pad or take magnesium baths and try to breathe.
Soemtimes some thing good is on TV at the same time!
Posted by MrG (Member # 10254) on :
You should know that by having lyme it reuptakes your glutamate levels which would give you that burning pain. Believe me I know. I had that very intense burning pain on the back of my neck, upper back, shoulders & coming down arms. Had it for a long time to.
Basicly follow the 'msg-free diet'. Cut back on high glutamate foods & especially 'free glutamate' foods & I promise you'll do much better. Just do a search on those keywords & you will find it.
Pat Sr
Posted by savebabe (Member # 9847) on :
I had very severe burning as well. My mother use to say that she could fry an egg on my back. The only thing that helped was aggressive treatments with abx.
Posted by MariaA (Member # 9128) on :
I had really good symptom relief for the same pain (mine was irritating but not crippling) with accupuncture for this one. Relief lasted quite a while after regular accupuncture treatments, and worked even though we didn't know it was Lyme at the time (accupuncturists don't treat based on Western diagnoses, anyway).
[ 17. December 2006, 11:21 PM: Message edited by: MariaA ]
Posted by Robin123 (Member # 9197) on :
Barton, just saw you're in Finland. Am curious to know whether you have heard whether very many people in Finland have Lyme disease?
I don't have the burning; I have other symptoms...
Posted by BartonFink (Member # 10818) on :
Thanks for your thoughts and suggestions. Yes we have quite many Lyme patients here (maybe some thousands) but no good Lyme docs. Posted by clairenotes (Member # 10392) on :
I am having a lot of luck lately with essential oils. I recently recommended it for sleep. It has also helped with burning, too. I used to get it in my scalp (my symptoms are all neuro).
The one I use has frankincense, lemon, eucalyptus, geranium, thyme, and patchouli in it. See www.yinessentials.com for more info. The product is called LymeEssence.
You might do some research on this, run it by your doctor, also, to make sure it is okay for you to use.
Claire
Posted by BartonFink (Member # 10818) on :
MrG, you mentioned Glutamate.. I wonder if that is the same as l-glutamineacid. It's included in one of the supplements I take for the liver... Well I gotta find out.
Posted by Truthfinder (Member # 8512) on :
Barton, the only thing that helped the burning pain in my spine was Neurontin (gabapentin). Pain medications did not help at all.
I've heard Neurontin works for some people, but not for others.
It might be worth a try. Neurontin has many side effects, though, so be aware of that.
Tracy
Posted by Foggy (Member # 1584) on :
quote:Originally posted by savebabe: I had very severe burning as well. My mother use to say that she could fry an egg on my back. The only thing that helped was aggressive treatments with abx.
Ditto
Posted by MrG (Member # 10254) on :
Barton...glutamine is one of those acids I never got a clear cut answer on. It sounds controversial. On one site it says it converts to glutamate & on another one just the other way around.
But here's a very good article by Life Extension Magazine that talks about glutamine & it's benefits. What especially caught my eye is how it detox's the ammonia in your body & brain. Here's the article: http://www.lef.org/magazine/mag99/sep99-report3.html
Hope this helps.
Pat Sr
Posted by BartonFink (Member # 10818) on :
MrG, I will try that msg-free diet. How lond did you apply it before noticing results?
Posted by cactus (Member # 7347) on :
Great screen name - that's how I feel sometimes, like I'm in a burning building. Gotta love John Turturro.
I've tried many options - diets haven't helped, but treatment with abx has helped, in conjunction with methylcobalamine shots and Cymbalta. I did try Neurontin, as mentioned above - to no avail, for me. Topamax is another one - did seem to help, but I couldn't tolerate the spacy, dizzy feelings.
On a good day, the burning is more of a tingling - which is much more tolerable.
Keep trying till you find something that works.
Posted by SForsgren (Member # 7686) on :
Burning pain is often neurotoxins. I would be looking at chlorella, CSM, and various other binders as a good option.
Posted by MrG (Member # 10254) on :
Barton...hmmm...let me try to remember. Well in my case I think it took about 3 months. But I was lazy, I admit it. I was still eating out of convience, meaning I was still consuming msg items.
But when I was persistent I mean WOW! I got rid of my seizures, burning pain, neck pain, plus others.
Do you need a source to get you started on the 'msg-free diet'? I can help you with that.
Pat Sr
Posted by BartonFink (Member # 10818) on :
quote:Originally posted by MrG: Do you need a source to get you started on the 'msg-free diet'? I can help you with that.
Pat Sr
Yes please, that would be cool.
Posted by BartonFink (Member # 10818) on :
quote:Originally posted by SForsgren: Burning pain is often neurotoxins. I would be looking at chlorella, CSM, and various other binders as a good option.
How about NAC? Any experiences on that? I've been using that for a month now, hasnt helped much. Maybe Chlorella would be better.
Posted by Andie333 (Member # 7370) on :
I get severe burning pain in my hip and my knee.
Initially, I could get a bit of relief from tramadol wtih tylenol, but I also found I was helped by bodywork -- specifically shiatsu massage and acupuncture.
Over time and with antibiotic treatment, I get this a lot less frequently, but it does still happen.
I hope you're able to find some relief, because it's awful!
Andie
Posted by SForsgren (Member # 7686) on :
NAC is not something I think of when I think of binders. I'd definitely consider something different for neurotoxin binding.
Posted by MrG (Member # 10254) on :
Barton...go to http://www.msgmyth.com/ Click where it says 'Test yourself For MSG Toxicity'. This should get you started. Visit the forum. I'm 'jolts' there btw.
Pat Sr
Posted by minimonkey (Member # 8693) on :
Lyrica helps me a lot with nerve pain, which is often the source of burning-type pain. (Neurontin is a similar drug, and I haven't tried that one.) Topamax had too many side effects for me to tolerate -- as someone stated above, the spacy feeling, the word-finding problems, etc. were too much to handle.
Scott is right, too -- whenever there is nerve involvement, another possibility is neurotoxins. Chlorella is wonderful for helping combat that.
Another thing that helps lots of folks with nerve pain is vitamin b-12. We lymies tend to be very deficient in this. It is hard for the body (especially our bodies!) to absorb, so I do the b-12 injections. Sublingual b-12 is another option, if you can't or won't do injectable drugs... but it is still poorly absorbed that way, from what I understand.
Posted by lymie tony z (Member # 5130) on :
Fink n others....
you may get some reliefe from utilization of a tens unit on various accupuncture sites...you can find the sites in the library...
I found this to be a more permanent fix...accupressure points for peripheral burning pain and accupressure points for deeper nerve pains...
It works on the principal of overstimulating the pain nerves so it is recommended one keeps the machine on for 24 to 48 hours...buy some batteries... low constant stimulation...
Also for back pains...pick a spot above your pain site and criss cross in a small X the four electrode pads...this interupts the signal to the brain and back....which should confuse the pain signals....
You can also get a very DEEP muscle/nerve massage with other settings on this device....
ALSO
I utilize ICE BATH or QUENCH....if it's burning due to WHATEVER...and you numb out the nerve with cold...
the burning will subside enough to get to sleep anyway......
Better have a good heart though....very very invigorating....fortunately I only had to deep plunge a few times....
Usually my pains were from the knees down......
and after about 3 or 4 plunges I could get to sleep...
zman
Posted by Allie (Member # 10778) on :
Hi everyone,
I'm a nuro lymie with lots of burning on my back and shoulders, and prickles and itches on my legs, head and arms. I think it might be neurotoxins because it gets worse when I'm on a good abx (right now mix of fluconazole and minocycline).
Sometimes I can't sleep due to the itch. An allergist I went to (in the course of seening dozens of other docs) recommended something called SARNA LOTION. I can buy it at the local drug store over the counter. The active ingredients are menthol and camphor, I think. I must admit that it takes a continuous application of this rather pungently smelling lotion but it does help tremendously with my itchiness.
Maybe I'll start it on my back and see if it helps with the burn.
What I like about the lotion is that it is not another pill to take... And it can't cause any nasty side effects.
Best of luck, Allie
Posted by Somerset (Member # 7534) on :
Dear BF, My doctor has put me on Lyrica, it has help in controlling that burning nerve pain & my seizures (killing two birds with one stone). Hope you find a treatment soon. Robin
Posted by lymeHerx001 (Member # 6215) on :
Lyrica gave me terrible nightmares, it was no coinsidence either. Tried it more then once.
Doc would only give me non-narcotics,,DAMN
Well skelaxin worked a little actually it was great at first, and that other one flexeril worked great too and then they stopped.
What helped me is no sugar or bread. NONE not even a little. When i cheat i pay.
If I cheat as I did today I had a little burning, if i did this every day Id really feel it. No exceptions for me.
If I do eat sugar, then it must mean to myself that I dont want to be well. Its as simple as that.
I eat lots of eggs, then onions, peppers, veggies\, salads.... some nuts.
![[Frown]](frown.gif)